Two Years

I've always been a dates person. I remember dates like few other people I know. Dates I met people or did things, birthday and anniversaries, and random other dates that are pretty insignificant. But today is a date I make sure to remember. It comes every year. December, of course. Two years since my diagnosis. Hmmmm.

December

Decembers lately have had a patterns for me. And I’m not sure it’s one that I like.

In December 2007, my uncle got really sick. Shortly after the new year, we found out it was colon cancer, with a tumor roughly the size of a softball. Three feet of intestine later, he is cancer-free. But Christmas Eves will always come with memories of seeing him pass out from pain.

The following year, a man from our church was diagnosed with brain cancer. He’d had tumors two decades before, but they were back with a vengeance. The likelihood of him being around for the following Christmas was slim. He beat the odds, but in the spring of 2009, he went Home, leaving behind his wife and four sons and one granddaughter.

That same year, in 2008, I was diagnosed with lupus. I found out about this man’s cancer about a week before I found out what was going on in my body, and I am ever thankful to God for framing my illness with his. It was a great reminder that though my life will be forever changed, it won’t be shortened by any great amount. Still, that Christmas was surrounded by doctor’s appointments and blood draws.

This year, I was talking with my uncle, the one mentioned above, just a few days before Christmas. He told me that he had just received some news about another friend of ours. He and his wife have been on our teams forever. He and my uncle, with a handful of other guys, play disc golf almost every week. Apparently, for the last year or so, this guy has been experiencing weakness in his hands and stuff. Last week, it was named: ALS. Wow.

I don’t know why this is weighing on my so much. Whether is several Decembers of diagnoses or the thought that another dear member of my extended family is facing pain, illness, and impending death. Or maybe it’s the thought of this vibrant, energetic man laying in a bed, unable to move and fully aware of what’s going on, while his wife of who knows how many years sits beside him.

Two things give me hope in this. First, he is going on some experimental drug that should slow the progression of the disease. He’ll have more time with his kids and grandkids and wife. Second, and way more important, that he knows Christ. He’ll have a new body in heaven, where he will be reunited with all those he loves and love him.

But for now, I will keep praying.

Louisville

My dear friend lives in Louisville, Kentucky. But it’s not pronounced “Louisville.” It’s more like “loo-a-vul” or “loo-vul.” There are other Louisvilles, though. Colorado, Indiana, Georgia, Mississippi, Tennessee, New York, Nebraska, Illinois, Alabama, Kansas, Maryland, Quebec (Canada), and Belize (South America) all have their own Louisvilles. Some of them are pronounced as spelled, and others are more like “Louie-ville.” That’s where I live, I think.

Lately, the Louie part of my life has been much more noticeable.

The pain isn’t too bad. Some in my fingers and toes; small joints. Nothing I can’t deal with. But the fatigue is killing me!

A few nights ago, I collapsed into bed at 7, after doing my best to stay awake since 5. In the evening! Last night, I fell asleep at 5, slept through my alarm and woke up at 9 to a message on my phone. I did my best to be awake, and stayed that way for an entire hour, then slept for another 12. That’s 17 hours!

In the last few weeks, I’ve slept through my alarm more times than I can count. I can barely stay awake for anything. I’ve canceled big plans due to exhaustion.

Extreme fatigue is what took me into the doctor in the first place. Two plus years later, it hasn’t gotten any better. How is one supposed to do life? How is one supposed to live like this?

Bear Snores On

I flew across the country this week to visit some friends who moved away a few months ago. Tonight, Amy was reading books to her two year old before bed. One of the chosen books was called Bear Snores On by Karma Wilson and Jane Chapman. It was a pretty good book that I had never heard before, so I was listening and trying not to fall asleep.

The book starts out with the bear sleeping in the winter. He’s been sleeping for a long time. Then, the mouse comes into the cave and lights a fire. The bear keeps snoring. A hare joins the mouse and sleeping bear, more animals come in and they make food and eat and are noisy, but the bear continues to sleep. They make a stew and have a little party. The pepper from the stew floats around and causes the bear to wake up. We wakes up with a big sneeze.

The bear wakes up and sees that all his friends are having a party and lots of fun and he didn’t get to have fun.

Sometimes I feel like the bear. I miss out on a lot of stuff and fun because I’m sleeping. But at the same time, the bear has to sleep in order to function the rest of the time. I’m the same way. Sleeping is not an option. I have to do it to take care of me and function less like a bear, and in doing so, sometimes I miss out on things.

So, to all of you out there partying and enjoying your parties, I’m going to snore on.

Eyebrow Shaving

I’m listening to a book by Josh Sundquist called Just Don’t Fall. It’s about how he “overcame illness and … The book tells the story from his point of view, as a nine-year-old diagnosed with cancer, and follows him through the journey of leg amputation and becoming a professional athlete. I’m only 1/3 of the way in, but I’m thoroughly enjoying it. Josh tells it well, through the eyes of a child. Everything he didn’t and did understand about being sick and doctors and cancer and life.

He finds out he has to undergo chemo and it will cause his hair to fall out and asks his mom to shave it for him. His little brother, who is seven at the time, says he doesn’t want Josh to feel bad, so he asks his mom to shave his head too. Then, inspired, eighteen of their friends from the homeschool group and church ask to have their heads shaved. So, Josh and nineteen friends had their heads shaved. Imagine a bunch of 7-10 year olds, bald in solidarity.

Josh was impressed that his friends would do that for him and especially noted the love he had for his little brother. “That night, I loved Matthew more than I ever had in my entire life.” Something like that.

A few days later, it was time to go to church. What was left of Josh’s hair had fallen out and it was his first outing in quite some time that didn’t involve needles. Before leaving for church, Josh’s mother took him into the bathroom to use makeup and draw on eyebrows. It turned out to be a mistake, Josh’s eyebrows looked horrible, and all of the sudden, he noticed eyebrows.

He walked into his Sunday School class and saw his friends. “Several of them are the home school boys who shaved their heads for me. But I noticed today that no one shaved their eyebrows for me.” While he obviously appreciated the gesture of all of them voluntarily shaving their heads, he all the sudden realized there was something no one else would understand… except maybe other cancer patients.

This struck me.

There are a lot of people who love me, and I know that. Lots of them do great things for me and are very supportive. Still, none of them will ever really know what it’s like for me and Louie. Despite all their efforts, there is no way for them to shave their eyebrows. There will always be a piece of my life, my struggle, my disease, that no one can understand.

Dependent

Yesterday I realized I am completely dependent on drugs. Prescription ones, and not in the usual sense.

I take a medication to keep me awake. It’s a stimulant that affects my central nervous system, or something like that, to keep me from falling asleep. It is generally only for people with narcolepsy or severe sleep disorders. Last week, as normal, I refilled my prescriptions online so I could pick them up and fill my pill box. This particular one didn’t get filled because it needed to be approved by my doctor.

I had Saturday off, as in, I was in my jammies all day, and most of Sunday too, so I wasn’t that tired. But on Monday at work, I was really tired. I honestly thought I might fall asleep in the orchard, right around two in the afternoon.

That’s when it hit me.

I am dependent. I require drugs to live my life. Not to live on a rollercoaster of highs and lows and narcotics to numb the pain. My body doesn’t go through withdrawals (although some say this drug can be addictive) and I don’t feel this overwhelming urge to take them. No, I take drugs so I can live. So I can stay awake all day, or at least for more than seven consecutive hours. So I can have a “regular” job, or as regular as I ever will.

So here I am, dependent on chemicals for better living. But also dependent on Christ for everything else- especially on the days I don’t want to have to be on drugs.

Out of Words

I read this blog. The woman who writes it has had lupus for over a decade and is pregnant with her second child. I love her perspective on things because, unlike many other lupus blogs, it’s real. Some people write about all their “cures” and others just whine the whole time. She sees things how they are- yes, she’s on lots of meds and is honest about the fact that there’s no cure right now, yet hopeful that there might be someday.

Anyway, she wrote this one a few days ago. I feel like it so often! At the end of my work day, when I walk in the door, I am out of words. Few emails get returned, almost no phone calls get made. The amount of energy it takes me (even when not in a flare) to do my job, answer questions, and do silly things like go to the bank or post office is amazing. At the end of the day, I’m out of words and I just want to turn off.

This is one of those priority things. I have to decide what’s most important to spend my energy on. Right now, I need it for my job. In six weeks, I won’t have a job anymore, so hopefully I can make different decisions. My boss is pretty understanding, but we’re at a point in time that I need to work as much as I can and not take too many days off.

There are so many times I’m with people just trying to stay awake. Contributing isn’t even something I can think about beyond nodding occasionally. If I keep my eyes open and mostly upright in the char, I have succeeded. I can’t even count the times I spent an evening with friends and left thinking, “I have no idea what we talked about.” I hate it, but I don’t know what to do.

Between work and having family in town, I haven’t had a day to be “off” in weeks. I can feel it. I’m toast. This weekend, I’m making it a priority. No people (when I can help it,) no plans, no showering (if I can get away from it.)

Hopefully after a few days off I’ll replenish my word count.